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Jakavi
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Myelofibrosis
I am trying to lose some of the weight I put on with
Jakavi
, with some success, so it could be low blood sugar. Anyone else experiencing this? Thanks. Lucieboo.
I am trying to lose some of the weight I put on with
Jakavi
, with some success, so it could be low blood sugar. Anyone else experiencing this? Thanks. Lucieboo.
lucieboo
in
MPN Voice
13 days ago
Jakavi advice please
Hi everybodyI learned today that my ET has progressed to MF. I had a bone marrow biopsy which seems to confirm it, although a spleen scan showed my spleen is completely normal. I'm on Pegasys 135ml at the moment but platelets are 729 (going up) and not well controlled. The consultant suggests moving
Hi everybodyI learned today that my ET has progressed to MF. I had a bone marrow biopsy which seems to confirm it, although a spleen scan showed my spleen is completely normal. I'm on Pegasys 135ml at the moment but platelets are 729 (going up) and not well controlled. The consultant suggests moving
Sivasi
in
MPN Voice
28 days ago
Imetelstat Users?
My dilemma is that I don't know the degree of effectiveness of the Imetelstat, and would almost certainly have to suffer my original bad symptoms when I stop using
Jakavi
.
My dilemma is that I don't know the degree of effectiveness of the Imetelstat, and would almost certainly have to suffer my original bad symptoms when I stop using
Jakavi
.
TimGS
in
MPN Voice
5 months ago
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New to Rux
Two more queries here: I'm newly diagnosed with post-ET Myelofibrosis and I've just collected my first prescription of
Jakavi
which I haven't taken yet.I noticed that the tablets are 20mg, and I have to take 2 a day.
Two more queries here: I'm newly diagnosed with post-ET Myelofibrosis and I've just collected my first prescription of
Jakavi
which I haven't taken yet.I noticed that the tablets are 20mg, and I have to take 2 a day.
Sivasi
in
MPN Voice
11 days ago
Low saturation with PV and Jakavi 20
I have had PV since two years. Rux started december '23. Good results with HB and HCT. HB is pretty low now 7.7 for a while. My weight has increased 10% wit the same diet. My saturation is, in rest 92, with effort I can raise it to 93/94. Long test last week revealed a very good lung condition (5,7
I have had PV since two years. Rux started december '23. Good results with HB and HCT. HB is pretty low now 7.7 for a while. My weight has increased 10% wit the same diet. My saturation is, in rest 92, with effort I can raise it to 93/94. Long test last week revealed a very good lung condition (5,7
Quitojohn
in
MPN Voice
2 months ago
New member - Post ET MF (Australia)
I started
Jakavi
in September 2023, and due to poor response, I was also put on Hydrea and Pegasys to slow disease progression. After my platelets dropped below 1000, I stopped the Pegasys.
I started
Jakavi
in September 2023, and due to poor response, I was also put on Hydrea and Pegasys to slow disease progression. After my platelets dropped below 1000, I stopped the Pegasys.
Hatchie
in
MPN Voice
11 days ago
On Pegasys 180 for 2 months.
At first just when I did injections now all the time Dr has taken me off Pegasys immediately put me back on Hu, only 500mg until
Jakavi
, is approved. Last time on Hu only platlet 1.99 million. Concerned that the kidneys and liver will need to recover. Has anyone else experienced this?
At first just when I did injections now all the time Dr has taken me off Pegasys immediately put me back on Hu, only 500mg until
Jakavi
, is approved. Last time on Hu only platlet 1.99 million. Concerned that the kidneys and liver will need to recover. Has anyone else experienced this?
ETMF
in
MPN Voice
6 months ago
sjogens?
(On
Jakavi
since August 23) So took Pegasys for about 16 months After a couple of months on Pegasys I started to experience close vision problems which could not be corrected with glasses. I saw several opticians. Over the last year my eyes have been very puffy as well.
(On
Jakavi
since August 23) So took Pegasys for about 16 months After a couple of months on Pegasys I started to experience close vision problems which could not be corrected with glasses. I saw several opticians. Over the last year my eyes have been very puffy as well.
Yanico
in
MPN Voice
6 months ago
Antimalaria Medication and Jakavi
I tried to find information to see if the malaria medications interact with the
Jakavi
and which medication best to take. It seems that it is safe but thought maybe I put that out here to see if anybody has any information or experience with it.
I tried to find information to see if the malaria medications interact with the
Jakavi
and which medication best to take. It seems that it is safe but thought maybe I put that out here to see if anybody has any information or experience with it.
Ticotopia
in
MPN Voice
10 months ago
Dry mouth and nose
Has anyone on
Jakavi
experienced a dry mouth and nose. I can drink water to help with a dry mouth but what do I use for my nose. It is very dry and sore. thank you in advance.
Has anyone on
Jakavi
experienced a dry mouth and nose. I can drink water to help with a dry mouth but what do I use for my nose. It is very dry and sore. thank you in advance.
wendycu
in
MPN Voice
1 year ago
Jakavi
Has experienced a weight gain while on
Jakavi
. I have been on and off it for past fifteen months due to side effects. I have put on over a stone in weight and find it very hard to shift it My blood pressure has gone up and my medication has been increased and a new medication added.
Has experienced a weight gain while on
Jakavi
. I have been on and off it for past fifteen months due to side effects. I have put on over a stone in weight and find it very hard to shift it My blood pressure has gone up and my medication has been increased and a new medication added.
Mudmaker
in
MPN Voice
1 year ago
Hydrea VS Jakavi
After 20 years with hudrea the moment has came when
jakavi
entered my life. Does anyone have experience with
jakavi
? I would appreciate it if someone could tell me their experience. I could say I'm not happy with it I found the transition very difficult.
After 20 years with hudrea the moment has came when
jakavi
entered my life. Does anyone have experience with
jakavi
? I would appreciate it if someone could tell me their experience. I could say I'm not happy with it I found the transition very difficult.
MarPapa
in
MPN Voice
1 year ago
Headaches. A Jakavi side effect?
I have been on
Jakavi
since August 22 after being diagnosed with MF. I had a high Sympton burden but was assured that’s not a reflection on my prognosis?! I have had constant headaches recently taking the Rux/
Jakavi
20mg twice a day. ( was reduced to 15mg fatigue increased so back to 20mg) .
I have been on
Jakavi
since August 22 after being diagnosed with MF. I had a high Sympton burden but was assured that’s not a reflection on my prognosis?! I have had constant headaches recently taking the Rux/
Jakavi
20mg twice a day. ( was reduced to 15mg fatigue increased so back to 20mg) .
Sherpa8
in
MPN Voice
1 year ago
Muddled
Hi All - the brain is muddled and I can’t find what I’m looking for but remember seeing a discussion about taking Vit D3 while on Jakafi (rux) for my PV. Also I’ve developed a pain just below my left knee and it’s down to some osteo as well as osteopenia, alongside a “fracture” in the tibial plateau
Hi All - the brain is muddled and I can’t find what I’m looking for but remember seeing a discussion about taking Vit D3 while on Jakafi (rux) for my PV. Also I’ve developed a pain just below my left knee and it’s down to some osteo as well as osteopenia, alongside a “fracture” in the tibial plateau
Anouchka
in
MPN Voice
10 days ago
Anxiety
My husband has PV Jak2, intolerant to Hydroxyuria, and is to start Jakafi 10mg twice daily. He has severe anxiety and is on SSRI (duloxetine) with recent request to increase dose to 40mg. My concern is that both drugs use the same enzyme (CYP3A4) to metabolize both medications, meaning there will be
My husband has PV Jak2, intolerant to Hydroxyuria, and is to start Jakafi 10mg twice daily. He has severe anxiety and is on SSRI (duloxetine) with recent request to increase dose to 40mg. My concern is that both drugs use the same enzyme (CYP3A4) to metabolize both medications, meaning there will be
DaisyJayne1
in
MPN Voice
18 days ago
Taking Prolia with Rusolitinib (Jakafi)
I have been taking Jakafi (15 mg) twice a day for the last 3 years for my polycythemia vera. I also take blood thinners for my thrombocytosis since I have had blood clots in my lungs twice in the last 2 years. I have had osteoporosis for a while, but my T scores from bone density test are really
I have been taking Jakafi (15 mg) twice a day for the last 3 years for my polycythemia vera. I also take blood thinners for my thrombocytosis since I have had blood clots in my lungs twice in the last 2 years. I have had osteoporosis for a while, but my T scores from bone density test are really
Buggerbear
in
MPN Voice
19 days ago
itching
Hi community, I have terrible itching and now being on Besremi I feel it has gotten a little worse. I plan to stay on Besremi unless it makes sense to switch to Jakafi, which I hear is excellent at controlling itch. I just got word from my dermatologist that some people have felt relief with a combination
Hi community, I have terrible itching and now being on Besremi I feel it has gotten a little worse. I plan to stay on Besremi unless it makes sense to switch to Jakafi, which I hear is excellent at controlling itch. I just got word from my dermatologist that some people have felt relief with a combination
Pogm
in
MPN Voice
2 months ago
Open letter
Hi all: I want to thank all who have posted regarding their experience with MPNs in this forum. I'm very grateful for the information and insight regarding ET, PV, and MF. All of you have educated and helped me a great deal. I write this while experiencing a great deal of stress and sadness; due to
Hi all: I want to thank all who have posted regarding their experience with MPNs in this forum. I'm very grateful for the information and insight regarding ET, PV, and MF. All of you have educated and helped me a great deal. I write this while experiencing a great deal of stress and sadness; due to
Kiruna
in
MPN Voice
2 months ago
Co pay assistance exhausted for Jakafi
My BCBS coverage through my employer was changed at the new year. Someone decided I was too expensive and changed how drugs were covered. They used to apply toward my deductible and then covered 100%. At the beginning of this year that changed. Drugs no longer factor into the deductible and I have a
My BCBS coverage through my employer was changed at the new year. Someone decided I was too expensive and changed how drugs were covered. They used to apply toward my deductible and then covered 100%. At the beginning of this year that changed. Drugs no longer factor into the deductible and I have a
Wewo01
in
MPN Voice
3 months ago
Jakafi and night
Anyone else on Jakafi/ruxolitinib and have their head “racing” at bedtime? I guess sort of like you’ve had several cups of coffee and laid down to sleep.
Anyone else on Jakafi/ruxolitinib and have their head “racing” at bedtime? I guess sort of like you’ve had several cups of coffee and laid down to sleep.
ProudHarry
in
Fight MPN
3 months ago
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